Understanding Lewy body dementia

Due to my love of Broadway show tunes, lately the song “Friend Like Me” has popped up pretty frequently on my favorite Pandora station.

It always makes me a little sad — the song is from the movie “Aladdin” and sung by Robin Williams, who committed suicide in August 2014. This week his widow did interviews in which she said he was suffering from Lewy body dementia, which she believes led to his death. Previously, his representatives cited depression and Parkinson's disease as contributing factors to his deteriorating health.

While suicide is always a tragedy, I suspect I'm not the only person who felt this most recent news created a better picture around Williams' death and may ultimately help caregivers better understand this horrible illness.

One of the hallmarks of Lewy body dementia is hallucinations, as well as delusions, according to Elaine Healy, M.D., Vice President of Medical Affairs at United Hebrew of New Rochelle. She has treated residents with this form of dementia and told me Thursday it was important to understand how it differs from Alzheimer's.

“Some people we believe have Alzheimer's have Lewy body at time of autopsy,” Healy said.

When a resident has Alzheimer's disease, the first signs are memory impairment. That may occur later for someone with Lewy body dementia, and the victim may also have fluctuations in cognition.

“With Alzheimer's, once they lose an ability, it's gone,” she said, citing the example of balancing a checkbook. “With Lewy body, there is a fluctuation with cognitive deficits.”

Additionally, “the people I have treated in my experience are not aware they have any problem,” she said. It's the family members who notice the changes.

In terms of treatment, it is critical for skilled nursing facilities to focus on the environment and nonpharmacologic approaches.

“One thing we have painfully learned is pharmacologic approaches don't work,” Healy said, citing this as an “irony and paradox.” When a resident is having delusions and hallucinations,

“But if you give those medications [antipsychotics] for the very same symptoms for someone with a degenerative brain disorder, it will make it worse. These medications don't work in patients with dementia.”

If there's ever a good reason to remember why the nursing home industry is reducing antipsychotic medications, it's the idea they can cause residents' additional pain. Williams' legacy may prove to be not only in the joy and laughter he brought to us all, but also in enhanced education around how to better help those with Lewy body.

Elizabeth Newman is Senior Editor at McKnight's. Follow her @TigerELN.